Dr. W. Ian Lipkin, director of the Center for Infection and Immunity at Columbia University, has spent more than two decades studying a debilitating chronic illness that is often misunderstood and stigmatized, known as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Lipkin's work faces an uncertain future after grants from the federal government were terminated last week, stripping patients with this chronic disease of one of the few sources of research endeavoring to understand their condition and find treatments, he said.
The Center for Solutions for ME/CFS is one of a few centers across the country dedicated to studying this condition, but it can no longer remain operational, Lipkin said. It was receiving funding from the National Institutes of Health, but the Trump Administration cut about $250 million in grants to Columbia, which the agency said occurred due to the university's "continued inaction in the face of persistent harassment of Jewish students.”
The center is one of several efforts to combat chronic illnesses stemming from infection affected by cuts made in the first few months of the Trump administration. In an executive order, President Donald Trump eliminated the Department of Health and Human Services advisory committee on long COVID, a condition in which symptoms of COVID-19 last for months or even years. Like many viral illnesses, including hepatitis B, Epstein-Barr virus and "long flu," fully recovering from COVID does not always happen quickly — or ever. An estimated 8% of American adults has ever had long COVID.
But the Trump administration has launched an all-out assault on programs designed to help long COVID patients or research the condition. The administration is not only dismantling the Office of Long COVID Research and Practice at HHS, the NIH has also said it was canceling some of the grants going to long COVID research under the Researching Covid-19 to Enhance Recovery (RECOVER) program, although Chemical & Engineering News reported that some of those had already been restored.
This week, HHS Secretary Robert F. Kennedy Jr. also announced he would remove 10,000 positions at the health agency, while HHS canceled more than $12 billion of federal grants used by states to in part track infectious diseases.
"It does not seem as though the priority for this administration is chronic illness."
The NIH and HHS did not respond to Salon's request for comment, but Kennedy said in a video posted to X that the decision to reassemble the HHS was made in part to make the federal government more efficient and save taxpayers "nearly $2 billion dollars a year."
Yet those involved in the research affected by these cuts say they will serve as a major setback in the pursuit of finding treatments to better the quality of life for patients with ME/CFS and long COVID — neither of which currently has a cure.
“We have samples banked that we took from patients who presumed their time and energy … was going to produce results — maybe not for them tomorrow but for people like them years from now," said Jaime Seltzer, Scientific Director at #MEAction, which advocates for people with ME/CFS.
Kennedy claimed he would prioritize “ending the chronic disease epidemic,” and said he would commit to funding research into long COVID during his Senate confirmation hearings. But recent decisions to reduce the long COVID support within the federal government appear to contradict that, Seltzer said.
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“It does not seem as though the priority for this administration is chronic illness because we have cut funding for studies on both chronic and acute illness,” Seltzer told Salon in a phone interview.
ME/CFS affects multiple parts of the body, including the brain, the immune system, and the endocrine system. Patients experience extreme fatigue, post-exertional malaise, cognitive dysfunction, and chronic pain. Despite the severity of these symptoms, patients feel left behind by the medical system, and the community has fought for decades to gain recognition for their condition.
This constellation of symptoms overlaps with long COVID. For one, both conditions are infection-associated chronic illnesses characterized by extreme fatigue. People with long COVID are also at an increased risk of developing ME/CFS. As one patient with ME/CFS and long COVID told Salon in 2023, the symptoms made her feel like she was in a “living dead state.”
“A quarter of ME/CFS patients are bed-bound or house-bound," said Beth Pollack, a research scientist at MIT studying ME/CFS and related illnesses. Up to 75% are too sick to work, she added.
“We’re looking at very severe illnesses where there are no [FDA-approved] treatments and patients in many cases are left to fend for themselves," Pollack told Salon in a phone interview.
The long COVID community, often referred to as "long haulers," has also struggled to be recognized by the medical community. However, the federal government did commit just over $1 million in federal funding to study the condition in 2020, and another $515 million in 2024. The federal government also established the Long COVID Advisory Committee in 2021 to coordinate a national approach to research and policy involved with the condition.
Many patients were discouraged that the funding issued in the Biden administration had not yet led to any successful treatments, and long COVID experts told STAT News last year that the federal programs were set up in a way to fail. Nevertheless, many were hopeful that the additional funding granted in 2024 could turn things around.
The Long COVID office was starting to have a real impact, getting researchers, patients and policymakers talking to each other and amplifying patient voices, said Michael Sieverts, the policy advisor of the Long COVID Patient-Led Research Collaborative. This included collaborations with the Researching COVID to Enhance Recovery–Treating Long COVID (RECOVER-TLC) program, he said.
“They were proactive at reaching out to us and getting feedback and then taking that to their federal colleagues and helping either make changes to programs or helping new programs get developed,” Sieverts told Salon in a phone interview. “The Office of Long COVID Research was right at the center of [RECOVER-TLC] coming into being.”
Federal agencies recognizing Long Covid also helped attract a new generation of young scientists to the field, Sieverts said.
“Having all of that thrown into turmoil is what is most discouraging,” Sieverts said. “It’s a new field, so it doesn’t have much of a foundation, and what is there is going to be in real jeopardy.”
While Long Covid might have brought some increased recognition for the ME/CFS community, the same degree of funding and recognition was not given to ME/CFS research, which received about $13 million in federal funding for 25 research projects in 2024. This amount has been declining since 2021.
Now, a critical source of ME/CFS research has been slashed as well, Lipkin said. Several projects were underway at the center at Columbia, including studies designed to test the role of genetics in ME/CFS, find biomarkers that could explain flare-ups, and track which infections went on to form ME/CFS in patients. Lipkin is personally donating money to help keep a small portion of the research afloat, but this barely covers a single employee and some supplies, he said.
“A significant portion of NIH funding for ME/CFS is funded through these centers,” Pollack told Salon in a phone interview. “So losing even just one center can have a really big consequence in the field.”
As of 2022, 1.3% of the U.S. population was living with ME/CFS. With tens of thousands of COVID infections still being reported weekly in the U.S., there will be more and more long COVID diagnoses in the population as well. Each time you catch COVID, it also increases the risk of developing long COVID, research has shown repeatedly.
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“If we don’t finish the studies that we started with long COVID, we are going to be set back to the beginning again the next time we see an infectious disease like this spreading through the population,” Seltzer said. That's because conditions like ME/CFS and long COVID are an outcome of pandemics and epidemics, she said.
Federal funding is responsible for more than half of all academic funding. While the Trump administration has said many of these cuts are intended to reduce federal spending and downsize the federal workforce, many researchers say it is interrupting scientific research.
“We have these public institutions as public institutions for a reason, and decimating them by firing one employee out of 10 is just leading to destabilization," Seltzer said.
Despite this setback, advocacy efforts in place for decades will continue to fight for recognition and resources for the ME/CFS and long COVID communities, Seltzer said.
“MECFS researchers and advocates have been managing to do the impossible with next to nothing, and we will continue to do so,” Seltzer said. “So for all of those folks with long COVID out there who are looking at this and feeling in despair, we have been here before and we have persisted … We are unlikely to snap our fingers and find a cure, but that was always true, and advocates are going to keep fighting.”
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